My Hopes for 2023

Posted on by Astrid

Hi everyone and a happy 2023 to you all! Regular readers of my blog know that I don’t do resolutions or new year’s goals. Instead, I call them hopes. Whether that isn’t just the exact same but worded slightly euphemistically, is up for debate. However, I found that, many years ago, when I did lists of resolutions, they didn’t work out. Now that I call them “hopes”, I usually probably subconsciously stick to them more. I say this every year as an introduction to my hopes.

This year, I haven’t actually thought of many hopes I have. That is, I do hope to achieve many things, but secretly I do think my “hopes” do need to be somewhat realistic in order to make it onto my new year’s list. Doesn’t that make them just like goals? Oh well, I guess so. With no further ado, I’m just going to write down the things I hope to achieve in 2023.

1. Get to a healthy weight. I never dreamt of writing this when I started my healthier eating journey at the beginning of 2022, but I lost over 10kg in 2022 and I’m only 3kg above a healthy BMI now.

2. Keep up my movement routine. I have my movement goal on my Apple Watch set pretty low at 300 active calories a day. I’d really like to surpass it regularly.

I would also like to improve on the parameters of my physical fitness level, such as my heart rate variability. These are all really low right now.

I am hoping to start actually exercising in other ways besides walking. I’d love to start swimming here on institution grounds.

3. Get to a more stable place mentally. In 2022, I hoped to remain stable mental health-wise, which got ruined by my choice to move and its consequences. Now, I’m hoping to get back to a place of relative calm again.

4. Further lower my antipsychotic dosage. I really hope the move to my current care home doesn’t mean I’m on 25mg of aripiprazole forever.

5. Get to a meaningful day structure and day activities. Okay, I have the new day schedule, which is better than the one my support coordinator gave me, but it’s not what I’d hoped for when I came here. I am really hoping to explore day activities beyond my room, beyond 60 minutes at a time and beyond one-on-one.

6. Write regularly. This is another thing I was pretty awesome at in 2021, hoped to maintain in 2022 and lost track of due to the move. I even only wrote five blog posts during the month of November. I am really hoping to get back into the writing groove this year.

7. Further explore my creative side. I’d really like to find ways to do part of my polymer clay work independently, so that I can actually do more complicated things with my 60-minute time slots of supported activity.

8. Socialize more. This was one of the main reasons for the move, at least according to the behavior specialists involved. Indeed, it is a positive aspect of my current home that wasn’t there at my old home. I honestly don’t know whether I can socialize much with the people at my home, but I can at least try and, if that doesn’t work out, there are almost 400 other residents here at the main institution. I’d really love to talk to some of them more.

I’d also love to connect to my peers in the cerebral palsy community more. I’ll hopefully attend the countrywide cerebral palsy day again in April and also hopefully join the online meetings more often. I’m also hoping to get in touch with the Eye Association more. I know this was something I hoped to achieve in 2022 but didn’t.

9. Get serious about the basics of my faith. I had a discussion about faith with my husband yesterday and the bottom line was that I tried to run without having learned to crawl, so to speak, because I was watching John MacArthur videos, which are deeply theological, even though I’m really still a new believer. I mean, okay, I’ve been a Jesus follower for two years, but I’m still struggling with the basic concepts of the Christian faith. That’s probably why I call myself a “progressive Jesus follower” rather than unapologetically claiming my identity as a Christian. I really hope to move closer on my journey towards God in 2023.

I am linking this post up with today’s #JusJoJan post, for which the optional prompt word is “resolution”. I am thinking of writing another post about resolutions in a different sense, namely the Model European Parliament debating contest I participated in during high school. However, it’s past 9PM so I don’t think I’ll have the time or energy for another blog post.

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Gratitude List (December 3, 2022) #TToT

Posted on by Astrid

Hi everyone. I did a complaint post yesterday and honestly am still feeling like crap, but wallowing in it isn’t going to help. Instead, for this reason, I’m going to write a gratitude list. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for my husband. He sticks by me through the hard place that is this new care home.

2. I am grateful for my mother-in-law. She tries to stand up for me to the powers-that-be too.

3. I am grateful for my old day activities staff. They visited me on Thursday and we had an extensive lunch together.

4. I am grateful for an opportunity to create another polymer clay flower. And a strawberry. Unfortunately, that having made that morning a relative success, was used by my staff as an opportunity to silence my mother-in-law’s attempt at speaking to the higher-ups.

5. I am grateful for the support of my online friends.

6. I am grateful that my most recent major self-harm episode, early Wednesday, didn’t cause any lasting damage.

7. I am grateful for quetiapine (Seroquel), my PRN medication. It hadn’t been refilled when I had run out of it a while ago, so I was without it when I badly needed it a few times this week. This was one of the reasons I had my major self-harm episode. However, I am so thankful it got refilled.

8. I am grateful for an electric heater. Since my heating broke down, my husband eventually called the care home to tell my staff they had to provide me a way to stay warm until my heating got fixed and they thankfully listened. Unfortunately, it seems the thing broke down as I was typing this post.

9. I am grateful the repair crew came out to fix my heating earlier this evening. Because of the type of heating, it may take up to 24 hours before my room will be comfortably warm though.

10. I am grateful for distractions in the form of books and podcasts and blogs. I may want to dive into the disability activist blogosphere once again, assuming such a thing still exists.

What are you thankful for?

Gratitude List (October 22, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m feeling very overloaded today, but it’s too early for me to go to bed or I might wake up in the middle of the night and not be able to go back to sleep. Instead, I’m writing a gratitude post. As always, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to let go of the issue with the staff from two weeks ago.

2. I am grateful for delicious home-cooked couscous, which a staff member who is originally from Morocco shared with me and a few others at the care home on Sunday.

3. I am grateful I beat this same staff member 4-0 in the card game mau-mau again today, but also grateful he beat me on Thursday. I think I told you all last week that he’s learning the game from me, so I love it when he wins (but I love it just a bit more when I win!).

4. I am grateful I was able to try out polymer clay a few times this week. So far, all of my projects failed before I even attempted to bake them, but that’s okay.

5. I am grateful for white chocolate. I consumed quite a bit of it over this week.

6. I am grateful my medication got sorted. It was quite the ordeal last Saturday and I actually called the out-of-hours GP surgery, not knowing that, if my staff said I could cope without meds for a day or possibly two, that meant a doctor had actually said so already. In the end, I got my Saturday morning meds at around 9PM and am now thankfully fully in the electronic medication system.

7. I am grateful for quetiapine. I just took one about half an hour ago and thankfully, it’s calming me.

8. I am grateful for fish. Doubly grateful, in fact. Last Saturday, my staff took me to the marketplace for fish and, this afternoon, the staff ordered fish for everyone at a fish shop in the next town.

9. I am grateful for warm weather. The daytime temperature hardly got below 15°C this past week and, for the past several days, it’s been 18°C.

10. I am grateful for a nice, long walk across institution grounds and through the nearby forest with a fellow resident ant two staff. I regret not having taken my phone with me so that I could have taken pictures.

What are you grateful for?

The Wednesday HodgePodge (October 19, 2022)

Posted on by Astrid

Hi all. I’m joining the Wednesday HodgePodge again. This week’s questions are truly random or at least I cannot see a common theme to them. I don’t mind though. Here goes.

1. What’s something you wish you’d figured out sooner?
That I am the beloved of God and that it really doesn’t matter what my family or anyone else thinks of me in the end, God will ultimately judge my heart.

2. Something from childhood you still enjoy today?
Swimming, playground equipment (when it’s strong enough to carry adult me, such as here at the institution), children’s books.

3. Are you a fidgeter? What’s the first thing that comes to mind when you hear the word fidget?
I am a definite fidgeter! The first thing that comes to mind is hair twirling. I’ve done it since adolescence. When I was 21, my autism diagnosing psychologist in fact told me I really had to unlearn it because it was a “serious social handicap”. Thankfully, the only people who agreed were my immediate family, who had more or less abandoned me by this time anyway.

4. Your favorite fall vegetable? How do you like it prepared?
Broccoli! In fact, about a month ago, I was discussing with a former staff what vegetable I’d choose if I could eat only one for the rest of my life and I picked broccoli. It is such a versatile vegetable. I love it cooked plain or with a creamy sauce, stir-fried or even raw in a salad. Next up are carrots. I eat them raw as a side to my lunch almost everyday.

5. What’s something you find mildly annoying, but not annoying enough to actually do anything about? Might you now?
My headphones (the cheap Chinese brand ones I bought six months ago as a replacement for the Bose QuietComfort 45 ones that broke within three weeks of me having bought them) being basically useless as wireless headphones due to the battery draining very quickly. I have been intending to replace them for a few weeks, but can’t decide for sure on a new model. For now, I’m using my AirPods with my iPhone, but this is indeed slightly annoying.

6. Insert your own random thought here.
I’ve been in the main institution care home for two weeks today and it’s going pretty well. We had some issues early on, among other things with my medication, but all has been sorted now.

Saying Goodbye to Mental Health Services

Posted on by Astrid

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

A Rather Frustrating Monday

Posted on by Astrid

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

#WeekendCoffeeShare (August 6, 2022)

Posted on by Astrid

Hi everyone on this first Saturday of August. Okay, that starting phrase gets boring, but who cares? Well, me, but I can’t think of any better way to start my post. I’m joining #WeekendCoffeeShare today. I’ve had five cups of coffee already today and it’s mid-afternoon. Want one too? I hope I haven’t used up the whole pot. Well, it’s a virtual coffee share. Let’s have a coffee and let’s chat.

If we were having coffee, I’d ask about your weather as usual. Ours has been mostly warm, sometimes hot. On Wednesday in particular, the daytime temperature rose to 31°C. Today, it’s only about 21°C. I even wore long sleeves this morning when going out for a walk.

If we were having coffee, I would share that I discovered a function I hadn’t previously known about existed in JAWS, my computer’s screen reader. When you press INSERT+4, INSERT being the designated JAWS key, JAWS displays a menu with special characters to select from, such as the euro sign, the degrees sign I used above, etc. Before I knew about this function, I’d do a Google search for something that’d pop up the character I wanted, copy/paste it into a text document and copy/paste from that document to my blog. However, if I wanted a character that wasn’t yet in the document, I’d need to do a search all over again. Besides, it’d mean having to open a separate app, in this case Notepad, and copy/pasting from there rather than selecting the character from the menu.

If we were having coffee, I’d share that, today, I started on 25mg rather than 27.5mg of aripiprazole (Abilify), my antipsychotic. So far, so good, but I’m not expecting any effects as of yet, as aripiprazole has a half life of 72 hours and the dosage decrease is so small anyway. This is my second decrease out of possibly twelve, each taking three months. That’s an incredibly slow taper, but it’s this way so that any possible changes in my mood and/or behavior can be observed over time.

If we were having coffee, I would tell you that I’ve been busy crafting this past week. Someone from a neighboring care home has her birthday next week and a fellow resident from my care home has his birthday on the 25th. I asked the woman who has her birthday next week what her favorite color is and she immediately understood why. “Ah, you know when I have my birthday!” she exclaimed. Of course, I didn’t reveal anything else. I am creating a necklace with all polymer clay beads for her. I did this for someone else, who had her birthday at the end of January, and back then it’d taken me weeks to create all the beads. Now, I was able to do half of them in one day. The other half is a little harder, because that color of clay is more difficult to work with.

For the man who’s having his birthday on the 25th, I bought a canvas, which I painted black this week and am going to decorate with polymer clay cookie cutter shapes once I’ve finished the necklace. I am doing his name and a car. Since the challenge theme for this month in the Dutch polymer clay Facebook group is mixed media, I’m also thinking of including some other technique, but I’m not yet sure what.

If we were having coffee, lastly I’d share that today, my husband went to get his new-to-him car, a Fiat Panda. He’s coming for a visit tomorrow. We originally thought of driving to some town or city in the area, but neither of us can think of an interesting one, so we may just go to Subway to have lunch.

How have you been?

Gratitude List (July 31, 2022) #TToT

Posted on by Astrid

Hi all on this last day of July! Today I’m joining Ten Things of Thankful (#TToT) for a gratitude list. I’m rather late to the party, but better late than never, huh? Here goes.

1. I am grateful for some good phone talks with the care facility’s behavior specialist this week. She gave me some useful advice on how to handle my frustration with respect to my recent care review with her and my nurse practitioner from mental health.

2. I am grateful my nurse practitioner gave the get-go for me to lower my antipsychotic again. Next week, I’ll be starting with the slightly decreased dose.

3. I am grateful for a nice visit from my sister and her family. I am so grateful Janneke, my oldest niece, was really friendly with me. I tried to show her how to make a play-doh unicorn, but she may still be a bit young for that and/or I wasn’t engaging enough.

4. I am grateful I got to hold Wolke, my youngest niece, who is just two-months-old.

5. I am grateful for the belated birthday gifts my sister and her family brought me. I got four sets of cutters and a set of texture sheets to use with my polymer clay.

6. I am grateful for a delicious salami pizza with added olives and red peppers. Yum! We ordered pizza (and fries for Janneke) last Monday when my sister and her family were here.

7. I am grateful for a good visit from my mother-in-law on Friday too. We went out to have lunch, which was delicious.

8. I am grateful for no mosquitoes last night or the night before. This hopefully means my anti-mosquito device, that I’d bought last Friday when in town with my mother-in-law, is working. Either that or none had been in my room at all. I don’t really care which, as long as the critters aren’t bothering me.

9. I am grateful my pasta machine isn’t broken after all. I had experienced it’d crumble several colors of polymer clay. Even after a deep clean session, it still did this, so I thought it must be broken. Thankfully, one of the most knowledgeable people in the Dutch polymer clay Facebook group took a look at a picture I’d taken and said it wasn’t broken. Apparently it’s the clay.

10. I am grateful the new pasta machine I impulsively ordered online when thinking the current one was broken, can be returned. I will probably ask my staff to drive me to the PostNL pick-up point tomorrow. When I have my refund, I’m going to order supplies I really do need from that same store I now ordered the pasta machine from.

What are you grateful for?

#WeekendCoffeeShare (April 24, 2022)

Posted on by Astrid

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?